Divided Bodies: Lyme Disease, Contested Illness, and Evidence-Based Medicine

"DIVIDED BODIES is an ethnographic deep dive into the controversy concerning the recognition of a chronic dimension to Lyme disease. Lyme is the most common vector-borne disease in the United States, and knowledge about it circulates widely across both medical communities and the public. While current biomedical knowledge of Lyme disease treats the disease as acute and curable, many Lyme patients report the persistence of symptoms long after their initial treatment. The divergence of the dominant epidemiological paradigm and the embodied experience of a chronic Lyme disease has become a site for controversy. While maintaining a decidedly neutral stance between both communities, Dumes argues that the study of contested illnesses, such as Lyme disease, is characterized by what she refers to as "divided bodies," or the persistent duality of an epistemic and embodied reality. This duality necessitates the structure of her analysis, straddling both communities and recognizing both forms of knowledge creation,and determines that her analysis will not attempt to resolve the controversy. Through eighteen months of work with Lyme support groups developed to provide forms of validation that the medical community does not, Dumes highlights the practices of the support groups that deal not only with the disease itself but also with the perceptions of the disease (chapter 3). Dumes interweaves patients' symptomatic experience with medical literature to demonstrate that, despite the authoritative nature of evidence-based medicine, it relies on symptomatic experience culled from patients. Dumes proposes that such contested illnesses, though they are a marginalized category in evidence-based medicine, are constitutive of evidence-based medicine as an epistemological project. In doing so, she reframes the analysis of diagnosis and treatment of Lyme as an exercise of biopolitics-the production of medical truths that in turn regulate and manage patients' lives through what is made visible or known through biomedical knowledge . The embodied suffering of chronic Lyme disease is therefore not only delegitimized, but even erased from medical purview-unrecognizable to the apparatus of practitioners and insurance carriers that operate on the terms set by biomedical knowledge"--
While many doctors claim that Lyme disease&;a tick-borne bacterial infection&;is easily diagnosed and treated, other doctors and the patients they care for argue that it can persist beyond standard antibiotic treatment in the form of chronic Lyme disease. In Divided Bodies, Abigail A. Dumes offers an ethnographic exploration of the Lyme disease controversy that sheds light on the relationship between contested illness and evidence-based medicine in the United States. Drawing on fieldwork among Lyme patients, doctors, and scientists, Dumes formulates the notion of divided bodies: she argues that contested illnesses are disorders characterized by the division of bodies of thought in which the patient's experience is often in conflict with how it is perceived. Dumes also shows how evidence-based medicine has paradoxically amplified differences in practice and opinion by providing a platform of legitimacy on which interested parties&;patients, doctors, scientists, politicians&;can make claims to medical truth.
Abigail A. Dumes offers an ethnographic exploration of the Lyme disease controversy to shed light on the relationship between contested illness and evidence-based medicine in the United States.